waiting

In ALL, ILLNESS, SNIPS & SNAILS by Stephanie Klein49 Comments

We’re in the waiting room.  Lucas Beckett had another lumbar puncture.  A brain and spinal MRI.  It takes about three to four hours.  They want to compare these images with the ones taken last week.  Are things better, worse, the same?  They suspect the same, but they’ll know once the tests and images are in.  They drew blood and fluid, want to compare the numbers. 

I hate having to initial forms, implicating that they’ve warned me properly.  Explained all the risks.  Scribbling an S and a K beside phrases like "brain damage," "infection," and "paralysis."  My signature in case.  In case things don’t go as expected.  Blood transfusions, necessary measures.  I have to remind myself to breathe. 

We’ve been gathering second opinions from children’s hospitals in Cincinnati, NYU, and Boston.  I’m still waiting to hear back from Boston. My stomach dropped when I heard "I definitely believe the cyst has to come out.  It’s putting pressure on the spine and might cause complications down the line."  Well what’s involved in surgery?  "An incision from neck to the top of his shoulders.  We’ll remove bone," he said.  We need to make sure there’s no infection going on, that if and when someone operates on his spine, that infection isn’t spread, if indeed there is a localized infection.  We want to learn what the culprit of this cyst is, and then of course, figure out exactly what to do about it.  What all the risks are. 

He’s in recovery now, and like always, we’re waiting with him… initial results: his white blood cell count is very high.  615.  Normal is 0-30. Last time it was 506, also high. I hate this.  I hate that spinal surgery is in his future, that they don’t know what caused it.  That I’m closer to answers I don’t want to hear.

Comments

  1. And we're waiting, with baited breath, with hope and well wishes and all the strength we can send your way via the 'net.

  2. In the virtual waiting room, with you. Be as calm as you can be, Stephanie, and rest easy knowing you will move hell and high water doing what it takes for your Lucas Beckett. He is in good hands, at the hospital and mostly, at home.

  3. I haven't posted in awhile but have been reading, and waiting, and felt the need to post today. Stay strong Stephanie, for your beautiful little boy. Sending prayers to you all from MN.

  4. I'm so sorry, Stephanie. You and Lucas and your fmaily remain in my prayers.

  5. By chance, does he have any birth marks? Specifically any cafe au laits?

    I hate that you're going through this. I hate it for you, for Lucas, for your whole family.

    FROM STEPHANIE: He has ONE single birthmark, not several. It's small, half the size of a dime, and is cafe au lait in color. But it's just one… and I don't think that would account for the cyst in his spine. Doubt it's NF.

  6. All the most hopeful wishes to you, Stephanie. I'm in Boston and my daughter's doctors are at Children's. Email if you have questions.

  7. Though I don't know you, I think of you and your sweet family often, sending healing thoughts your way.

  8. Well, my first reaction when I looked at the latest pics of him was -"Did she make this whole thing up about him being sick? Is she going to re-categorize all these Lucas posts under "Writing Exercise" :)
    (Sorry for the emoticon, it needed to be done)

  9. I've been checking in so often here to see what's in store for Lucas. That photo of him in the post below captures his beauty and innocence so perfectly.

  10. As a mother of 3, I know the knot in my stomach as I read this blog is a fraction of yours, but know that this too shall pass and you and your family will weather this storm. Positive thoughts are sent your way.

  11. Please also consider Pittsburgh Childresn Hospital. It's one of the top pediatric hospitals in the country.

  12. Okay. Let us pray that this problem can be fixed. Then . . .this problem must be fixed. All will be well. Believe it.

  13. I feel like I just lost my breath too. What can we say, except that here we wait – here we pray – here we hope that baby boy and your family have great days ahead. Some problems, there's no getting over, it's just getting through. Thanks for writing. Don't stop.

  14. oh, stephanie! i'm so sorry for everything you're going through. thank you for the updates- i know i'm one of many who check this site more than once a day hoping to hear how little Lucas is doing. you and yours are in my prayers daily.

  15. So sorry. Wishing you the best possible outcome and a quick and easy recovery and resolution for little Lucas.

  16. Stephanie,
    My thoughts, as always, are with you and your family. I know the last thing you want to hear is "advice", but having lived in Boston for my entire life and had more experience with Boston hospitals then I would like to have had, I can say, without a doubt that Boston is the BEST place in the world for medical expertise.

    My sister had open heart surgery at Brigham & Women's last year. The surgery was a HUGE success and we were able to get her as a patient of the chief of surgery. My niece was born premature at Mass General and the NICU there was UNBELIEVABLE. These are amazing people and if you need any sort of recommendations, etc. Please contact me.

    Once again, my thoughts are with you and Lucas.

  17. Hopefully your sweet boy's nature, smiles and flirting give you comfort. This terrible ordeal is so much harder on you and Phil than it is on Lucas – he seems to act as if nothing is wrong. In a way, that may make things harder – he doesn't look like he's in pain or like there's any problem, so why operate? But if they do need to operate, at least it's now while Lucas is not as affected by everything and will probably not remember any of this. And he has such loving, strong, sweet parents to help him through what we all hope will be a quick and easy recovery! I do hope that even if they are answers you don't like, that you get them soon so that you, Phil and the beans can get back to a wonderful life of living without hospitals.

  18. Stephanie, I have been reading your blog since you were on the ABC segment. I just want you to know that your entire family is in my thoughts. Let us know if there is anything you need.

  19. Praying for everyone Stephanie just keep thinking about Abigail touching her Brother's head with her tiny healing hand. Much Love, JK

  20. Many years ago my son had to have a rod put against his spine at AI Dupont in Wilmington, DE. The doctor there, to reassure me, told me that most doctors of his specialty do this surgery at most once a month and that he did two or three a week. It was helpful to hear that. And the surgery was a success.

  21. That's what I was getting at. Dime size is actually sizeable for his age, but 1 is meaningless.

    My girl has 3 (she only had 1 at Lucas' age) but no other signs, thankfully, of NF. Knock on wood. Kina hare. She's been checked out by a geneticist who couldn't find anything else and now we just sit around not knowing unless any new developments occur. Fuckers.

    Anyway, good. Only reason I mentioned it was that there was a child who lost his dad on 9/11 in the WTC who had to have surgery due to NF that caused a cyst in his spine. That plus the fact that I have cafe au laits on my mind roughly 18 hours a day. Ugh.

  22. Stephanie,

    One of my girlfriend turned me on to your website a few months ago. I fell in love with your writing & after devouring the contents of your blog, purchased your memoir. (ps. Love the colorful cover- brightens up my bookcase)

    Each morning I log on to you site- following your story. I have not commented until now- but felt the need to show my support during this difficult time. Stay strong. I'm not a religious person- but someone once told me that God only gives us what we can handle.

    Stay positive,
    -MWB

  23. Just a note wishing Lucas and your whole famile nothing but the best. I know it doesn't seem like it right now, but before long this will be just a bad memory. I'm sure of it.

  24. I'm never sure if these things help or hinder @ a time like this but believe or not my father just had a similar surgery. It was in fact an infection related to a rare genetic disease called Neiman Pick. While I do know how harrowing it is to sit an wait for a diagnosis and then ask the tough questions that follow it, I can't begin to imagine how hard it is to do for your child. My heart goes out to you. I hope that you find peace and comfort soon.
    Stephanie
    P.S. My Dad is still recovering but the prognosis is very positive.

  25. Sweetie,
    Wow. There's nothing else to say. Take each day and love one another. I'm pulling for him; for all of you.

  26. I have been reading the archives of your blog and came across the below lines you had written about Phil in august 2005 entry:
    'He calms me and makes me want to give him the world. Mine is brighter with him in it.'

    At this crucial time of life under so much pressure, I just wanted to remind you of how you felt 2 yrs back and not to lose confidence/trust in each other. You both are excellent parents and have so much stamina in yourselves.

    Together all of you will get through this.

  27. i have several friends who are doctors/researchers at the brigham and mass gen. and i would second jocelyn's rec. also as someone mentioned previously the more puzzled the doctors are, the more interested the best doctors in the world will be. so a top research facility may be worth it.
    good luck to your little guy.

  28. Stephanie,

    I am in Memphis and I know you feel as if you are being pulled in a million directions but please consider St. Jude Children's Hospital. Everyone feels as if their hometown hospital is the best but depending on what the prognosis is, St. Jude really is the best. Look into it if/when you can.

  29. been thinking of baby lucas all day. i am so glad to hear you are getting other opinions stephanie, that is vital. boston and cin. are so excellent (this coming from a pediatric nurse in manhattan! i honestly wouldnt choose ny over the other 2.) in the end go with your instinct of whats best and just keep reminding yourself he WONT remember any of this hellishness. you will, we will too, but he will get through this and be the same happy precious kid. i continue to pray for him.

  30. I truly believe there is power behind group prayer and there are tons of us out here pulling for him. And for you. Each day is one day closer to resolution.

  31. Sounds like you are doing all you can to get to the bottom of this with second (and more) opinions. Must be damned frustrating though to be going through this in the first place. Healing vibes to little Lucas.

  32. Remove bone????

    Each time I hear of more serious news about Lucas, I feel like the bottom drops out of my stomach. My friends, coworkers and I are praying fervently for your family and for Lucas, Stephanie, and believing for his total recovery.

    Right there with you in the waiting room.

  33. You write so clearly about your feelings and fear, Stephanie. I imagine it's why so many people feel your despair and want to reach out to you.

    I hope you get your answers soon and that the problem and the solution are manageable. As if this weren't hell enough as it is, it's so difficult and frustrating if/when you end up with varying recommendations and opinions. I'll pray you get the right answers.

  34. Hi –

    So glad to hear you are getting second opinions. First of all, you need to know that you are doing a really really good job…he has a great mom and he's at a great hospital. Everything they're doing sounds appropriate. However, I'm a doctor, and from what that doctors seem to be telling you, you need to have him see a specialist. As I read these posts, his case does seem to be unusual…or at least not something they are seeing everyday. I agree with the above posters who said that Boston is the best medical care in the country, (maybe the world). I cannot tell you how unbelievably hard it is to get a job or residency there. They truly take the best and the brightest. That is where I would go if it was me or my family memeber. This is all very scary but just remember that he seems better for now, you have a moment to take a deep breath, gather information and take it one step at a time. Nothing needs to be done in the next 10 minutes. You're doing a great job.

  35. Stephanie, my thoughts and prayers go out to you. I've been reading your blog for what feels like forever. I so admire your honesty and ability to "put yourself out there." You may be interested in checking out http://www.carepages.com
    If you're not familiar, it's a blogging website for people whose friends and family are dealing with illness. While you obviously already have a blog, they have a directory where you can search for other families in similar circumstances. I became familiar with the website through friends of mine whose very young daughter had leukemia. It was an incredible way for them to connect with others… Times like this can make you feel very overwhelmed and lonely, so it may be nice to share with other parents. I truly wish you (more importantly Lucas) the best.

  36. Oh dear, I do hope that Lucas gets better and that you find answers. I know that there's nothing I can add except for my best wishes.

  37. On Joy and Sorrow
    Kahlil Gibran

    Your joy is your sorrow unmasked.
    And the selfsame well from which your laughter rises was oftentimes filled with your tears.
    And how else can it be?
    The deeper that sorrow carves into your being, the more joy you can contain.
    Is not the cup that holds your wine the very cup that was burned in the potter's oven?
    And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
    When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
    When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

    Some of you say, "Joy is greater thar sorrow," and others say, "Nay, sorrow is the greater."
    But I say unto you, they are inseparable.
    Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

  38. My thoughts and good wishes are with you and your family throughout this time.

    I just wanted to let you know that I'm a medical librarian at the children's hospital in Melbourne Australia (a world renowned teaching hospital) if you would like me to find any information for you about what the doctors are telling you please feel free to ask.

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